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Priorities for Patient‐Centered Outcomes Research: The Views of Minority and Underserved Communities
Author(s) -
Goold Susan Dorr,
Myers C. Daniel,
Szymecko Lisa,
Cunningham Collins Carla,
Martinez Sal,
Ledón Charo,
Campbell Terrance R.,
Danis Marion,
Cargill Stephanie Solomon,
Kim Hyungjin Myra,
Rowe Zachary
Publication year - 2017
Publication title -
health services research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.706
H-Index - 121
eISSN - 1475-6773
pISSN - 0017-9124
DOI - 10.1111/1475-6773.12505
Subject(s) - deliberation , community based participatory research , health equity , quality of life (healthcare) , data collection , quality (philosophy) , medicine , medical education , set (abstract data type) , outcomes research , patient centered outcomes , gerontology , participatory action research , psychology , nursing , alternative medicine , political science , public health , sociology , social science , philosophy , epistemology , pathology , politics , anthropology , computer science , law , programming language
Objective To learn how minority and underserved communities would set priorities for patient‐centered outcomes research ( PCOR ). Data Sources Sixteen groups ( n = 183) from minority and underserved communities in two states deliberated about PCOR priorities using the simulation exercise CH oosing A ll T ogether ( CHAT ). Most participants were minority, one‐third reported income <$10,000, and one‐fourth reported fair/poor health. Design Academic–community partnerships adapted CHAT for PCOR priority setting using existing research agendas and interviews with community leaders, clinicians, and key informants. Data Collection Tablet‐based CHAT collected demographic information, individual priorities before and after group deliberation, and groups' priorities. Principal Findings Individuals and groups prioritized research on Quality of Life, Patient‐Doctor, Access, Special Needs, and (by total resources spent) Compare Approaches. Those with less than a high school education were less likely to prioritize New Approaches, Patient‐Doctor, Quality of Life, and Families/Caregivers. Blacks were less likely to prioritize research on Causes of Disease, New Approaches, and Compare Approaches than whites. Compare Approaches, Special Needs, Access, and Families/Caregivers were significantly more likely to be selected by individuals after compared to before deliberation. Conclusions Members of underserved communities, in informed deliberations, prioritized research on Quality of Life, Patient‐Doctor, Special Needs, Access, and Compare Approaches.